Guilt, tears and burnout—Impact of UK care home restrictions on the mental well‐being of staff, families and residents

Abstract Aims The aim of this study was to explore the impact of the pandemic on the emotional and mental well‐being of family carers, care home staff and residents, in light of changing restrictions, increased testing and vaccination rollout in the UK. Design Longitudinal, qualitative semi‐structured interview study. Methods Remote semi‐structured interviews were conducted with family carers of care home residents with dementia and care home staff from different care homes across the UK. Baseline and follow‐up interviews were conducted in October/November 2020 and March 2021, respectively. Data were analysed using inductive thematic analysis involving members of the public with caring experiences. Results In all, 42 family carers and care home staff participated at baseline, with 20 family carers and staff followed up. We identified four themes: (1) Developing anger and frustration; (2) Impact on relationships; (3) Stress and burnout; and (4) Behavioural changes, and perceived impact on residents. The mental health of everyone involved, including family carers, care home staff and residents, has been negatively affected, and relationships between family carers and staff have been severely strained. There was a general lack of adequate mental health support, with little relief. Conclusions The pandemic has had a detrimental impact on the lives of those surrounding care homes—from residents and staff to family carers. Consideration should be given on how to best support the mental health needs of all three groups, by providing adequate easily accessible mental health care for all. This should also focus on rebuilding the relationships between family carers and care home staff. Impact This is the first paper to highlight the effects of the long‐lasting and miscommunicated restrictions on residents, carers and care home staff, and highlight the urgent need for continued mental health support.


| INTRODUC TI ON
Care home residents have been particularly adversely affected by the COVID-19 pandemic. During the peak of the first UK pandemic wave, around a third of COVID-19-related deaths were care home residents (ONS, 2020). Nearly half a million people live in care homes across the UK (Department of Health, 2020; ONS, 2020; Public Health Scotland, 2020), approximately 70% of whom are living with dementia.

| Background
Poor and under-supported mental health and well-being in family carers and staff has been of concern prior to the pandemic. Many family carers experience increased carer burden, particularly in the more advanced stages when symptoms and support needs increase (Sutcliffe et al., 2017;Watson et al., 2019). When relatives move into a care home, this can often be accompanied by heightened levels of depressive symptoms and feelings of guilt in family carers (Sury et al., 2013). Similarly, care home staff in the UK is working under difficult and unsupported conditions, facing difficult job demands regardless of the pandemic situation.
Recent research has highlighted that burnout in care home staff varies by different demographic factors, with younger staff generally experiencing higher burnout (Costello et al., 2020), while a systematic review and meta-analysis evidenced low to medium stress and burnout across care home staff in general (Costello et al., 2019).
While research into the effects of the pandemic on people living with dementia and unpaid carers is emerging, ranging from faster dementia deterioration, social support service shortages and increased carer burden (Cohen et al., 2020;Talbot & Briggs, 2021;Tujit et al., 2021), there has been little focus on the impact on family members of care home residents to date. O'Caoimh et al. (2020) surveyed family members of care home residents in Ireland, reporting reduced emotional well-being linked to visiting restrictions, as well as poor levels of communication from care homes towards family members. Research from Finland further supports these findings, highlighting the emotional burden experienced by family carers and the increased sudden progression of dementia symptoms in care home residents (Paananen et al., 2021). This is corroborated by research into the mental health and emotional well-being of unpaid carers and specifically those caring for communityresiding people living with dementia Rainero et al., 2021;Savla et al., 2020). Findings from the UCL COVID-19 Social Study indicate higher levels of depression and anxiety in unpaid carers in the UK at all time points throughout the pandemic (Mak et al., 2021). In support of this, Hanna et al. (2021) reported increased levels of anxiety and depression, as well as loneliness in unpaid dementia carers during lockdown. However, the limited published evidence on family carer mental well-being of care home residents predates vaccination programmes, and is country specific at present. It is important to understand the mental health impacts of the pandemic on family members, as well as residents, throughout the different stages of the pandemic in order that future care can be better orientated to serve both the residents, and their families.
The effects of the pandemic on staff working in care homes have received less academic attention than the impacts of the pandemic on frontline healthcare staff. While research details the mental health impact that working on the frontline of healthcare services (Gilleen et al., 2021;Wanigasooriya et al., 2020), the more limited evidence on the mental health of care home staff also highlights burnout among nursing home staff (Prados et al., 2021). In a Spanish survey of 340 care home staff, Prados et al. (2021) showed how increased hours during the pandemic also contributed to higher levels of burnout, but mediated by social support where available. However, this appears to be the only published studies to date into the mental health impact of COVID-19 on care home staff, with no combined account of all three groups involved in the care home setting-residents, staff and family carers.

| Aims
Considering the high levels of emotional needs and support for both family carers and care home staff prior to the pandemic, and an indication of reduced mental well-being in the general population during the pandemic, the aim of this longitudinal, qualitative study was to explore the impact of the pandemic on the emotional and mental well-being of family carers, care home staff and residents.
This was in light of the changing nature of care home restrictions, vaccinations and testing. Given the dearth of evidence into the mental health impacts of the pandemic's restrictions on family members, care home staff and residents together, this study provides significant initial findings highlighting the need for psychological support of frontline social care staff as well as those residing in, and being involved with, care homes.

K E Y W O R D S
care homes, carers, COVID-19, long-term care, mental health, nursing, nursing homes, staff well-being

| Design
This is a longitudinal qualitative semi-structured interview study.

| Participants
Care home staff, staff working with care homes as part of their clinical roles and family carers (relatives) of a care home resident/person living with dementia (PLWD), aged ≥18, were eligible to take part. There were no exclusion criteria for care home staff such as length of working in the sector or other. We used convenience sampling for recruitment. The study was advertised through third sector organizations, an existing network of dementia and ageing groups, and social media.
Interested participants contacted the principal investigator via email and an approved participant information sheet was emailed to them.

| Ethical considerations
Verbal informed consent was taken before the audio-recorded interview commenced. Ethical approval was obtained from the University of Liverpool Ethics Committee (Ref: 7626) prior to study commencement.

| Data collection
We collected basic demographic characteristics of participants including age, gender, ethnicity, as well as relationship to the relative with dementia, dementia subtype (from family members); and, years of working in the care home sector, staff role and size of the care homes from care home staff. The interview topic guides were co-produced with clinicians, unpaid carers of people living with dementia, and academics, and guided by the experiences of carers and professionals.
Iterations of the topic guide were circulated between team members until a final version was reached. Family members were asked about their experiences of care home visitation during the pandemic, and potential impacts on their relationships with residents. Care home staff was asked about their experiences of providing care and working in care homes during the pandemic, how much support they have received with their changing work demands, and difficulties they have faced. Topic guides for baseline and follow-up interviews are attached in Appendices I and II.
Baseline interviews were conducted between October and November 2020, and follow-up interviews were conducted in March 2021, when COVID vaccinations were ongoing and restrictions were lifted to first allow one visitor, then two, into the care home using PPE.
Two researchers with in-depth experience of conducting qualitative researchers (CG, senior research fellow, KH, lecturer, both with PhDs) collected the data. Interviews were conducted remotely over the phone or online (Zoom), and verbal informed consent was recorded on an audio recorder prior to the interview. Interviews lasted up to 60 min.

| Data analysis
Audio files were transcribed (and anonymized in the process), before blind double-coding by the research team (CG, KH, SM, JC and MG) and an assistant psychologist. Recruitment ceased once data saturation was noted. Data were analysed descriptively, employing inductive thematic analysis (Braun & Clarke, 2006), and the final, conceptualized themes were discussed with carers to ensure mutual agreement. Specifically, coders met at several times after coding, and once between finalizing codes, to discuss emerging themes.

| Validity and reliability
Data were collected by two researchers with in-depth expertise and training in qualitative research, as outlined above. In addition, one public adviser was trained in analysing qualitative data and supported the data analysis further, enabling a broad professional and lived expertise in dementia care to analyse and interpret the findings.

| Public involvement
One current and two former unpaid carers were involved in all stages of the study, including study document design, contribution to group discussion, and interpretation and dissemination of findings. Public involvement fees were paid according to NIHR INVOLVE (2013) guidelines.

| FINDING S
In all, 42 participants (26 family carers and 16 care home staff) were included in the baseline interviews, and 20 (n = 11 family carers and n = 9 Care home staff) took part in a follow-up interview. Table 1 shows the demographics of the included participants. Using thematic analysis, we identified four main themes: (1) Developing anger and frustration; (2) Impact on relationships; (3) Stress and burnout; and (4) Behavioural changes, and perceived impact on residents (see Table 2). Each theme comprised of a number of sub-themes, and both themes and subthemes are illustrated by quotes that represent typical responses for the respective themes and sub-themes.   Family carers, however, were only witnessing this distress during alternative face-to-face visits or remote visits, or hearing about it when staff relayed this information to families, which was not often the case.
Staff themselves felt distressed on seeing residents with dementia cry and be upset about being unable to see their families.
For residents with dementia it was then very difficult for staff to repeatedly explain why things had changed and why they had to stay inside the care home without (much) family contact. Going to work on a daily basis witnessing deteriorating levels of mental well-being in residents also took its toll on staff.
why tell a family like your loved one is absolutely beside herself sobbing every day, that's not going, so they don't know so this poor lady or gentleman they ended up going on antidepressants because they're crying and getting all upset that's affecting the people who are sitting around them so they're just sitting there drugged up basically to keep them calm and you think that lady was before lockdown she was up dancing with me. ID32, female activity coordinator biggest thing was the lack of visitors, visiting stopped immediately and I noticed that we call them the service users they tended to start getting really upset and more so confused than what they were that they felt like they were a bit abandoned and couldn't understand why even though you try to explain to them as best why you could. ID42, female care assistant In contrast to most care home staff and family carers' reports on the well-being of residents, some care home staff reported that residents seemed more settled since the lockdown, due to the lack of visitation and social stimulation from family and friends. This suggests however that residents were passive and not stimulated, and experienced a decline in cognition.
what I was saying is a lot of the managers that I've spoken to that worked in the dementia care homes were saying at the beginning of the lockdown and the first few weeks how much more settled the residents where and they were having less PRN medication being administered because there wasn't a lot of visitors going in and the homes were more quieter and more settled so I had a lot of comments from the managers to say that the residents were more settled. I think through loss of contact and now she was she's been going in and obviously following a negative LFT and everything and now the difference in this lady is unbelievable, she's almost back to how she was before. F-Up ID21, female carer, daughter On some occasions, family carers were caught on the other side of this decision-making process, with one family carer remarking that he saw one family go and visit their relative more frequently than he was allowed to visit his relative. infection and mortality (Rose et al., 2020), and it would thus be important for future research to particularly explore their emotional experiences of working in, living in and caring for someone living in a care home. However, many families from minority ethnic backgrounds tend to care for their relatives at home as opposed to utilizing care homes (Nielsen et al., 2021) so that recruiting family carers from minority ethnic backgrounds for this purpose is more difficult.

| CON CLUS IONS
The pandemic has had a detrimental impact on the lives of those surrounding care homes-from residents and staff to family carers.
While care homes have reopened, vaccine rollout and increased testing improved and slowly enabled safe care home visiting, the impact on people's mental health and well-being, and particularly strained relationships between family carers and care home staff, will take a long while to be mended and require urgent attention. Mental health support appears to be limited amongst staff, with none reported specifically for residents and family carers.
This lack of support adversely impacts well-being and the subsequent care of residents. Consideration should be given about how to best meet the needs for mental health support to all three groups, and approaches explicitly outlined in the new plans for social care recently announced by the UK government; for example, enhanced links between primary care provision and care homes as a mechanism for facilitating signposting and referral for residents and relatives to occupational health or NHS support for staff. Organizations should be encouraged to facilitate access to multiple opportunities of emotional support for staff and relatives in times of crisis, to manage the workload stresses associated with the role and thus maintain the best quality of care for residents and their families.

ACK N OWLED G EM ENTS
We wish to thank all family carers and care home staff who took part in this study, and we also wish to thank the many family carers who expressed an interest to take part after we were already booked up. We also wish to thank Maxine Martine and Lynne McClymont for transcribing the audio files very swiftly to analyse the data in time.

CO N FLI C T O F I NTE R E S T
None.

PE E R R E V I E W
The peer review history for this article is available at https://publo ns.com/publo n/10.1111/jan.15181.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.